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Crohn's Disease Forum » Your Story » New here but not to Crohn's...


04-23-2006, 04:53 PM   #1
Judyc
 
Join Date: Apr 2006
Location: Rochester, New York
New here but not to Crohn's...

Hi, my name is Judyc, I live in upstate NY, in the states. Have been living with this disease most of my life. Have had it now approx 38 years, so I really don't know what life is like without it, especially since it has progressed in the last 14 or 15 years, as I had to finally go on long term disability. I'm fortunate that I have it only in my small bowel and just had a colonoscopy to see that this was still the case and it is. But with it getting worse, 3 big surgeries, last one in Oct of last year, was already scheduled for this surgery at the Cleveland Clinic (excellent Digestive Center in Ohio, people from all over the world go there with the severity of my disease, about a four hour car ride for me), as I had many adhesions, two partial blockages but a week or so before my departure date, I got a lot worse with pain and was rushed into a local hospital here and with tests, found that my intestines were beginning to perforate so had to have emergency surgery there as I was unable to safely go in an ambulance for four hours. So knowing this was not the greatest care at this local hospital, it was a horrible surgery, my worst ever, took many more feet out with resectioning and I just had more pain than ever, was in the hospital for 9 days, a month later, I was in more pain, rushed again and the CT found fluid in my pelvic region from the operation a month earlier. So again, they rushed me to get this out via a tube stuck in my side (pain pain pain) and they got about 200 cc's out which was a lot more than I thought, all old blood from that surgery. If I had waited a few days later, I could have filled up with a bad infection from this, just got it in time but again, 9 more days in that hospital as it disrupted the healing of the original surgery. So by the end of December, I just still didn't trust this surgeon as he even said "I Might have missed something" to me TWICE, so I made a trip to Cleveland Clinic first week of January and they did many tests and said basically this surgeon did an OK job under the circumstances but couldn't tell me why the fluid, though one doctor said he might have knicked something on the way out! At any rate, I'm finally feeling better, back on 6MP, and oxycodone daily for some quality of life . I only take 3-4 a day of the pain killers which takes the edge off as I have pain daily but it's bareable. So that's the recent update on me. Mine is a long story, dating back to my early teens when they thought I was anorexic, when I was in and out of the hospital for my appendix, and it never was that, though they did snip that out during my first surgery in '93 when I only had six strictureplastys, which are nothing compared to those resectionings. It is in my family, my aunt had it for many years and died a few years ago at age 74 of cancer but she lived a long life with it. She was my inspiration. I would talk to her about what she would do back in her day for pain or the big "D", they really suffered much worse back then. She was such strong person...that was a tremendous loss for me. Well, I'll stop rambling now. Glad to get the invite from Mike. I used to go on the UK board but it got too big and I didn't know anyone there anymore so I'm thankful to hear from you, Mike....If anyone wants to ask any questions, feel free, I feel I'm quite the expert on this disease and feel so bad for people that just get dxed with it in the prime of their life. I can't imagine having a healthy life and out of the blue get this to deal with. It only made me a stronger person, I think. There are so many new things out now and new things coming out, my doctor tells me. Thanks again, Mike......Judyc

Last edited by Judyc; 04-23-2006 at 05:49 PM.
04-23-2006, 05:02 PM   #2
ReeRee
 
Hi Judy!

I'm blown away from reading your story. 38 years is a long long time. I'm on longterm disability too, have been for 15 years now. I miss working, but I was an accountant and it was very stressful. Now I'm just a stay-at-home-mom homeschooling my youngest who is 15 and trying to help my 22 y/o daughter thru college. You give me a lot of inspiration to keep going! I can't wait to get to know you better!

Welcome to the group!
04-23-2006, 05:07 PM   #3
Karen
FRIEND 4 1 & ALL
 
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Join Date: Apr 2006
Location: Ohio

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HELLO & WELCOME JUDY !! Small world to see someone from NY as when we go back to see my family in NH we always stay in VICTOR ... so take care & see you around the board !!
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04-23-2006, 05:38 PM   #4
Judyc
 
Join Date: Apr 2006
Location: Rochester, New York
Thanks Ree Ree and Karen for the Welcome. It is a small world if you know where Victor is! Ree Ree, I worked till I was 43 and I still miss it. I still wake up feeling I have no purpose anymore. I was married but divorced years ago with no kids. But I live with my 2 "kids", 2 little dogs that at least get me out of bed daily on the bad days. I'm a fraternal twin and she just dxed with a much worse disease than me but she has been pretty much healthy all her life so she's not taking it well. It's a lung/liver disease (genetic, she never smoked), it's called Alpha One Antitrypsine Disease. It's a fairy newly named disease, many have died in their late 50's of asthma, when it was actually this disease. She takes these infusions weekly for the rest of her life, brand new drug and it has slowed the progression of her disease. She has emphasima and never smoked! Plus they have found two masses in her lung and have been "watching" this for three years now. They can't get to it where it is, very dangerous place to get to so they CT it every six months,they have grown but not a whole lot. They pretty much think it is slow moving lymphoma which is common with this new disease. This is what I mean about getting dxed in the prime of her life, she had a great job she just had to stop a few months ago and she is going nuts not working but she also feels awful daily and she went to the Cleveland Clinic for a second opinion, they agreed with the doctors here in Rochester and when she was there, she was also dxed with fibromyalgia! Her disease is an auto-immune like our's....bad genes is what I blame this all on, not the fact that we were twins. But she is in deep depression now, as I would be if I were her. Like I said, struck down in the prime of her life, but she was born with this, had all the early symptoms, asthma, allergies, pneumonia many times and then one night after working out, she couldn't get her breath and she was rushed to the hospital and a very smart young doctor tested her trypsine level and it was so low, they knew what she had. I understand we all make the trypsine in our bodies and it keeps the lungs and liver healthy but in her case, it is blocked and not making any. So far, her liver is fine, thank God. It's just hard to see her like this when she's been the "healthy" twin all our lives till three years ago. You just never know....sorry so long!......Judyc
04-23-2006, 05:49 PM   #5
ReeRee
 
Sending all my love and cyber hugs to your sister. Bless her heart! I can't imagine. Reading that makes me grateful to only have Crohn's.

I have 3 "furbabies"....lol. I love them like they're people. I really don't know what I'd do without them.
04-23-2006, 05:56 PM   #6
jyarmo
 
Hi Judy C, it's a pleasure having you on this board. You have certainly gone through a huge ordeal throughout your life--Crohn's has not been kind to you at all. You sound very strong willed and I'm sure it's hard to see your sister dealing with her own troubles now. All of your new friends on this board are pulling for you and your family though!
04-23-2006, 06:35 PM   #7
Judyc
 
Join Date: Apr 2006
Location: Rochester, New York
thanks, jyarmo for the kind words. With these lives of ours, we certainly can use more understanding friends who experience the same things. I have 2 close friends and after all these years of me being in and out of the hospital and all the meds and surgeries, they still don't 'get it". One does more than the other. The other still gets upset if I can't make a party or something we planned a month ago....she just has never been sick and doesn't understand that I don't even know from day to day how I will feel. Right now, I'm way overdue for my B12 (sometimes I just forget that!), hoping to get that this week and hopefully it will help a little. But getting back to friends and family that still don't understand this disease,...my oldest sister, who is healthy for the most part, when I was sickly for a year or more, was out with the family, while I was home waiting for them as I was having another bad day (was recently dxed then with the fibromyalgia), well, she came up to my bedroom (at my parent's at the time), and said, "I just want my sister back"...that just made me madder as I said, I will feel better in time, just a flare and with the fibromylagia, well, that just doubled the pain and is the reason I had to quit work. I finally said to her "do you think I LIKE to stay at home when everyone is out to dinner, celebrating a birthday, etc.?" Sometimes I get the feeling she thinks I like living in my bed and popping pills and going to doctor appts and dealing with pain and living on the blandest diet ever, liquid diet for months before a surgery due to the partial blockages, dropping a ton of weight and looking just as bad as I feel. I just still feel after all the years of this, no one really knows what this is without being in our shoes...they try hard but never really get it. One of my best friends was visiting me in the hospital last October and the nurses were ONE hour late with my pain shot and I was going out of my mind, screaming, crying, etc. And she said, "oh, you are just miserable today"....I screamed at her, "if I could get up and jump out that window I WOULD to be painfree! She just walked out mad! Can you imagine? I hoped she wouldn't come back but she did the next day and still to this day tells everyone I was a "baby" that day!! Two days post op, two partial blockages with perforating and many resections and she said I was a "baby" crying for pain meds!! Well, at least the heads of the hospital heard about this and came in to apologize, said it would never happen again, and it happened a few more times....like I said in another post, I would never go to the local hospitals anymore, the nurses are working 14 hour days, overworked and there just isn't enough of them. Next time it will be Cleveland and I don't care if I'm perforating...I won't go through that again. I know most of you have had that pain so bad you pray to God to take you. But with this big surgery, it was the absolutely worse pain I've ever had, and I haven't had a baby but I believe it has to be as bad as that or worse! Pain I live with daily, but it will never be something I accept, I just try to "get by" with it with my pain meds. I'm fortunate to have a good GI doctor that understands the pain I live with and never holds back those meds as she knows I would never take more than I need. She also knows as most of you do, that people with chronic pain do not get high on any narcotics, they just take care of the pain and we also never get addicted to them. Before my second surgery, I was on 23 percocets a day, with two fentynal pain patches on. My surgeon said that he couldn't believe my GI would put me on such pain meds. Said I would have to go into rehab to get off of them! I said, well, doctor, you don't do your research and told him about chronic pain, etc. And by the end of one week I was down to 3-4 percocets and NO pain patches, no withdrawal symptoms either and he was shocked as I did it myself. I would never abuse what gives me some quality of life.......Judyc
04-24-2006, 12:24 AM   #8
cookey
Mama Crohnie
 
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Join Date: Apr 2006
Hi Judy, great to meet you. I must say though, please don't take this wrong..if you're friends get mad at you for not being able to attend a party or any other function. I would seriously question their friendship. You are a woman who has a Disease, most importantly you are Judy, someone they should see as your friend first,...if these friends really cared, they would take the time to learn of your illness. Ignorance, the first step in learning. It really breaks my heart to know, that rather them being there for you, they are getting upset with you. Something that you don't need, stress from friends...or any other form of stress. I certainly don't mean to imply they are not best friends, maybe they are scared..worried for you, and just going about sharing there concern for you, all the wrong way. Good luck hun, you certainly do sound like a very strong woman. Please take care, you are among great people here...one's that you will know for sure will listen. I don't mean to speak for others, but from what I've read so far, I'm sure everyone will. If I'm wrong I do apologize.

Last edited by cookey; 04-24-2006 at 12:29 AM.
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